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2.2.18

So people I'm actually on holiday as I type! "Ooo... Errrr...""Magic!" I know I'm so 'on' my game LOL. So no t's not magic it's actually just I've brought my macbook with me and thought I could get some writing done whilst we were here as I really haven't sat down and talked in a good long while so this is me doing that and I thought I may as well try and document the holiday whilst I was on it and therefore it will be so much more accurate than any of my previous posts where I've simply just remembered.

We left on Friday and travelled 6hours, I slept a lot of it and I still maintain I have some kind of narcolepsy because I honestly physically cannot stay awake in cars for long at all, I have tried so hard and it just doesn't happen, I feel so awful for Mark as he then ends up having to drive basically on his own or maybe that's a blessing? He doesn't have to listen to me drone on LOL. We got here though and it's a beautiful little converted barn and SO accessibility friendly, I'm SO impressed;- it's all on one floor, has wide doors, wide corridors, very spacious living and kitchen area, beautiful bedrooms (There are two), the bathroom is really spacious and makes showering me nice and easy as we've brought my shower stall to help :), there's also a log burner which is really lovely. Even from just the couple of days we've been here I totally already recommend it.

This trip really is a relaxing one for us we don't plan on being massive tourists we really do just need a rest physically and certainly mentally, I'm not sure people quite understand the toll living with a chronic and terminal illness has on a person and certainly the partner of a person. So today we actually ventured out for Sunday lunch to a really cute pub and luckily we have a tiny little village that's a 2 minute drive down the road that has everything we need and it really is just the loveliest little getaway so far.

Wednesday 31st January 2018

Gosh the weather really has been a tad on the awful side, extremely windy very wet and just generally cold and drizzly which admittedly I haven't minded that much because the place we're staying is so lovely and cosy I don't mind being inside listening to all the goings on outside. The log burner is getting lots of use and Mark seems to have really got the hang of using it, I mean I won't touch the thing we don't need anyone burning a house down now do we? LOL. We have managed to get out to the Lakes though and sent a lovely morning afternoon walking/being pushed around a lake, it was a bit hillier than first thought though so it was tough going for Mark, he did so well though bless him, I was SO impressed. Luckily at the end of our walk there was quite a steep hill and a lovely bunch of people could see how hard Mark must have been finding it at this point after pushing me around for so long and offered to help which was SO lovely of them.

That's something I find with the country, people generally seem more willing to help when you're in a bit of a jam. Everyone seems really impressed with our off road wheelchair as well people always compliment it and ask how well it does with the terrain and whatnot. I'm quite proud of my little chair she does well with what we throw at her. She did have a minor issue on our way here though she had a bit of a puncture that we were worried about but we managed to find a little bike shop that actually managed to change her tyre there and then for next to nothing which was amazing!

We also paid a visit to the Beatrix Potter exhibition which I thought was really cool! Unfortunately some of it was shut off due to a bit of refurbishment but that just meant we got a discount so no complaints from me :). It was really cute though seeing all the little animals all around and as a child I was never particularly "in to" Beatrix Potter but I knew of it and my mum had some lovely things from her childhood that she always showed us. I just thought it was a cute little thing to be able to see whilst we are here and omg I could have spent a fortune in their gift shop, I'm such a sucker for cuddly toys and all that type of stuff and they had literally all of the animals and I just wanted them all, but nope I restrained myself and managed to not buy them. They were a tad on the expensive side for the size of them.

We're still really having a very relaxing time here and the weather is certainly making it much easy to just relax and not do too much, I seem to be catching up on some much needed sleep that I seemed to be lacking. Before coming here my sleep had for some reason become so broken and interrupted and I just wasn't sleeping very much at all and when I don't sleep it really starts to affect me both physically and mentally, I'm not sure why it was so bad but I think maybe I had a bit of anxiety leading up to my Papworth appointment? It's hard to really know but sometimes even if I'm not nervous about something it tends to show itself with my sleep and then poor Mark suffers as well because he's sat up with me at 2/3am making me a cup of tea listening to my rather energetic ramblings. So hopefully Mark's actually catching up on some sleep too lol.

We'll hopefully get out this evening and again tomorrow for a little jaunt somewhere but so far I'm having a very peaceful time :).

Thursday 1st February

Pinch Punch first of the month people. It is our last full day and we have been to a lovely pub and had lovely lunch, the people here are so friendly but luckily not in that horrid oppressive way when they don't know when enough is enough. I seem to have taken a liking to this ice-cream they have around here, it's chocolate and has chocolate chips in and I just seem to have taken to it, it's like their brand or something and I just really like it. I've just had THREE scoops, which if you know my eating habits at the moment would be hard to eat usually but nope all gone! :-D

It has been lovely though and just the most relaxing little getaway which has been lovely I think it's something we've needed, just kind of a time to get away and organise things in our minds and decide what it is we need to get done and what we might do in the coming months, reflect a little. I'm still very cautious about organising things months and months in advance the furthest I have planned is August 25th whereby me and Candice are going to see Britney in concert and admittedly I wouldn't normally have planned that far in advance but sometimes you have to because it's not like I can wait till July and expect there to be tickets still. But I get best sister award for best Birthday present whoop! whoop! lol.

Ultimately though I feel like we're going to be leaving here tomorrow in a lovely place mentally and when we get back we have plans to implement and sort out, personally I want to work on my legs. If I'm going to be like this for a extended period of time I'd like to try and gain some strength in my legs and hopefully it'll make things a bit easier for me and then maybe I can do a bit more for myself and then that in turn will help Mark and make things easier on him. So that's my personal main aim at the moment and we're planning our next adventure which might take more planning than any of our previous trips but it's potentially the most exciting one yet but that also means there might not be another trip for a little while, whilst we figure that one out and pay for it too haha!

I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.

This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.